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. 2021 May 20;23(5):e28164.
doi: 10.2196/28164.

A Real-World Rheumatology Registry and Research Consortium: The German RheumaDatenRhePort (RHADAR) Registry

Stefan Kleinert  1   2 , Peter Bartz-Bazzanella  3 , Cay von der Decken  3   4 , Johannes Knitza  5 , Torsten Witte  6 , Sándor P Fekete  7 , Matthias Konitzny  7 , Alexander Zink  8 , Georg Gauler  9 , Patrick Wurth  9 , Peer Aries  10 , Kirsten Karberg  11 , Christoph Kuhn  12 , Florian Schuch  1 , Susanna Späthling-Mestekemper  13 , Wolfgang Vorbrüggen  14 , Matthias Englbrecht  15 , Martin Welcker  16 ; RHADAR Group  17
Affiliations

A Real-World Rheumatology Registry and Research Consortium: The German RheumaDatenRhePort (RHADAR) Registry

Stefan Kleinert et al. J Med Internet Res. .

Abstract

Real-world data are crucial to continuously improve the management of patients with rheumatic and musculoskeletal diseases (RMDs). The German RheumaDatenRhePort (RHADAR) registry encompasses a network of rheumatologists and researchers in Germany providing pseudonymized real-world patient data and allowing timely and continuous improvement in the care of RMD patients. The RHADAR modules allow automated anamnesis and adaptive coordination of appointments regarding individual urgency levels. Further modules focus on the collection and integration of electronic patient-reported outcomes in between consultations. The digital RHADAR modules ultimately allow a patient-centered adaptive approach to integrated medical care starting as early as possible in the disease course. Such a closed-loop system consisting of various modules along the whole patient pathway enables comprehensive and timely patient management in an unprecedented manner.

Keywords: patient-reported outcomes; real-world data; registry; rheumatology; symptom checker.

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Conflict of interest statement

Conflicts of Interest: WV, CD, SK, PB-B, and MW are members of RheumaDatenRhePort. WV, CD, and PB-B were involved in the development of Rheport. JK, AZ, TW, and SPF are members of the scientific board of RheumaDatenRhePort.

RhePort was developed and provided by the Verein zur Förderung der Rheumatologie eV, Würselen, Germany, and QINUM GmbH, Cologne, Germany. The development was supported by the government of Northrhine-Westfalia, Germany, and by the European Union (EFRE; AZ: 005-GW02-075A). The maintenance of this service has been supported by AbbVie, Novartis, Chugai, UCB, and Sanofi-Aventis. RheVITAL was developed and provided by the Verein zur Förderung der Rheumatologie eV, Würselen, Germany; QINUM GmbH, Cologne, Germany; and the Martin-Luther- Universität Halle, Halle, Germany. The development was supported by the government of Northrhine-Westfalia, Germany, and by the European Union (EFRE; Förderkennzeichen: EFRE-0800750). RheumaDok and the RHADAR database were developed and technically implemented by Nils Körber and Joachim Elgas GbR, Erlangen, Germany. RheMIT has been developed for the German Rheumatologists’ Professional Association (Berufsverband Deutscher Rheumatologen) by itc-ms.de, Marburg, Germany. The app RheCORD is the property of the RheCordHealthCare GmbH. It was preceded by AxSpALive, PsALive, and RheumaLive. The latter three were sponsored by UCB Pharma GmbH, Monheim, Germany. All apps were developed and technically implemented by Star Healthcare Management GmbH, Cologne, Germany. JK has received research support from Novartis Pharma GmbH to evaluate RhePort.

GG receives speaker and consulting fees from Abbvie, Celgene, Chugai, Gilead, Novartis, and UCB. CK, KK, and SS-M are members of RheumaDatenRhePort GbR that had part of the software developed as described in this publication. FS is part of the advisory board at Abbvie, Gilead, Novartis, and Sanofi Aventis. ME has received remunerations from RheumaDatenRhePort GbR for statistical data analyses & consultation.

The RHADAR GbR has received honoraria from UCB Pharma GmbH, Sandoz Deutschland/Hexal AG, and Lilly GmbH, and research support from Novartis Pharma GmbH.

Figures

Figure 1
Figure 1
RHADAR patient and data pathway. Green boxes resemble established parts of the RHADAR network. Orange boxes are in preparation. RHADAR: RheumaDatenRhePort.
Figure 2
Figure 2
Screenshots of RhePort.
Figure 3
Figure 3
Screenshots of RheCORD.
Figure 4
Figure 4
Screenshot of RheumaDok.
Figure 5
Figure 5
Screenshot of RheMIT.
See this image and copyright information in PMC

References

    1. Krusche M, Sewerin P, Kleyer A, Mucke J, Vossen D, Morf H, Rheumadocs und Arbeitskreis Junge Rheumatologie (AGJR) Facharztweiterbildung quo vadis? Specialist training quo vadis? Z Rheumatol. 2019 Oct;78(8):692–697. doi: 10.1007/s00393-019-00690-5. - DOI - PubMed
    1. Dey M, Zhao SS. Google search data as a novel adjunct to patient and public involvement in rheumatology research. Rheumatol Int. 2021 Apr 19;41(4):771–779. doi: 10.1007/s00296-020-04723-0. http://europepmc.org/abstract/MED/33074346 - DOI - PMC - PubMed
    1. Kardeş S, Kuzu AS, Raiker R, Pakhchanian H, Karagülle M. Public interest in rheumatic diseases and rheumatologist in the United States during the COVID-19 pandemic: evidence from Google Trends. Rheumatol Int. 2021 Feb;41(2):329–334. doi: 10.1007/s00296-020-04728-9. http://europepmc.org/abstract/MED/33070255 - DOI - PMC - PubMed
    1. Raciborski F, Kłak A, Kwiatkowska B, Batko B, Sochocka-Bykowska M, Zoń-Giebel A, Gola Z, Guzera Z, Maślińska M, working team Diagnostic delays in rheumatic diseases with associated arthritis. Reumatologia. 2017;55(4):169–176. doi: 10.5114/reum.2017.69777. doi: 10.5114/reum.2017.69777. - DOI - PMC - PubMed
    1. van der Linden MPM, le Cessie S, Raza K, van der Woude D, Knevel R, Huizinga TWJ, van der Helm-van Mil AHM. Long-term impact of delay in assessment of patients with early arthritis. Arthritis Rheum. 2010 Dec 30;62(12):3537–46. doi: 10.1002/art.27692. doi: 10.1002/art.27692. - DOI - PubMed

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